Specific Gene Tied to Dermatitis Herpetiformis

Thank you people! I also Googled D.H. + eyes and just realized the burning rash on my eyelids is DH. The rash started a few month's after going gluten free (4 years ago) and I didn't think it was DH because I have never seen the eyelids mentioned before. But now I see small blisters appearing on the eyelids as well. The only thing that has giver me any relief from the discomfort is Vaseline.

I have DH and there is something I want to add. I can keep my rash gone about 95% of the time through diet alone. I have never been on medication for it. Avoid the iodine, and heavy iodine seafood. Also, I no longer go into barns or allow regular flour based mixes in my home. If you are breathing gluten, you are eating gluten!

I can really relate. I suffer from scalp, facial, chest and back lesions. I've been gluten-free for over a year now and I've seen very little progress. I also never ever cheat. I don't eat out, refuse to take any pills besides dapsone and have basically become a hermit. I only leave the house when I have to go to work. Thankfully, I work in a cube that is far away from the public. I resumed Dapsone at a low level because I cannot take these facial lesions anymore . I have had low blood counts on this medication before but I do not see any alternative. I've used Flucocinide (steriods) on my scalp for over a year and they are still not "disappearing". There are days that I just want to die. I do not relish the thought of living 40 plus more years with this disease.

Try avoiding corn. I found it caused what I called 'deep cystic acne' for me. I'm just figuring out that it must be DH. The dermatologist always called it acne off the scalp and seborhea (sp) on the scalp. When I get off all grains --especially CORN---it goes away!

These comments are SO helpful. I was diagnosed about a year ago and still haven't been able to clear up my lesions. My doctor had never even heard of this - I basically forced testing. It's unbelievable to me that this the medical world is so blind to this... Hopefully more testing will help bring attention.

Wow. It took us 18 months to find the celiac diagnosis in my wheelchair-bound, renal failure son. The existing diagnosis led the dermatologist to 'assume' the sudden appearance of skin issues were related. Although we are now almost 4 weeks into the celiac diagnosis (2 previous gastroenterologists missed it), it was not until I read this article that I knew what the skin condition is called. Maybe I should educate the dermatologist.

I searched symptoms online and requested that my dermatologist and gastroenterologist test for dermatitis herpetiformis and celiac disease, both later confirmed by blood test and biopsy. The gastro doctor had actually ordered the test among others 2 months prior, but didn't send enough blood to the lab, so I spent another 8 weeks wondering about the unknown final test. The dermatologist could only say that the lesions covering me from head to toe "didn't look like DH", but to humor me he tested anyway. It took 2 years on the gluten free diet for the lesions to heal for good.

I would like to ask to anyone about the exercise or any kinds of sport activity, is it advisable to do it moderately or something? Shouldn't we have intensive exercise? For the past one year I have found it pretty hard to do exercise since when I sweat it gets really uncomfortable and the next day my skin gets worse because I get too tired and it seems I've been "forcing" myself that much (which in fact, no. before I got DH I exercised much, much more), I feel like I'm super fragile and weak physically and it really bothers me since doing sports was my hobby, and I am unable to do so since I've been having this dermatitis herpetiformis. Thanks.

I was diagnosed with DH at the age of 12. My twin sister was finally diagnosed with celiac disease about 5 years ago (we're 42). I've finally committed to a gluten-free diet within the last 18 months but still occasionally get breakouts. I've taken 100mg/daily of dapsone for about 20 years. Since going gluten-free, I've dropped over 50 pounds and I have much less fatigue. I do b12 shots monthly as anemia is a big problem. I break out in all the usual places but also get rashes inside my nose, mouth, ears (right at the entrance of my ear canals) and eyelids. I've never been lesion free on my scalp.

Try avoiding corn. I found it caused what I called 'deep cystic acne' for me. I'm just figuring out that it must be DH. The dermatologist always called it acne off the scalp and seborhea (sp) on the scalp. When I get off all grains --especially CORN---it goes away!

Please, do not make the mistake of not eating corn. It is TOTALLY gluten-free. You may have been eating corn that came in contact with a product that has gluten. Try Polenta, the one made in Italy. It is delicious and totally gluten-free, just like corn on the cob, tortillas, and all corn products.

I would like to ask to anyone about the exercise or any kinds of sport activity, is it advisable to do it moderately or something? Shouldn't we have intensive exercise? For the past one year I have found it pretty hard to do exercise since when I sweat it gets really uncomfortable and the next day my skin gets worse because I get too tired and it seems I've been "forcing" myself that much (which in fact, no. before I got DH I exercised much, much more), I feel like I'm super fragile and weak physically and it really bothers me since doing sports was my hobby, and I am unable to do so since I've been having this dermatitis herpetiformis. Thanks.

Same here. I had to stop exercising because I feel so run down from celiac disease and dermatitis herpetiformis combined. Complex B vitamins help a lot.

My husband found out he had celiac 13 years ago. He developed an itchy rash on his eye lids very itchy and burning. We went to 3 different doctors in N.Y. no one could help him. I found a web site about dermatitis herpetaformis and got him off iodized salt. Within days it went away. That was 6 years ago. It came back a couple of months ago. We only used un- iodized salt in my house. Does any one have any suggestions. I have yet to hear if anyone else suffers from DH on their eyelids.

I have not been diagnosed formally by a doctor, but in researching the disease and realizing most of my flare ups have correlated with wheat (and perhaps iodized salt)--I'm assuming it's related. Years ago I had itchy blisters on my hands that didn't go away until I went on a very strict diet. I don't have health insurance, and am otherwise fairly healthy--but will try gluten-free and un-iodized salt.

Along with gluten, iodine, there is also fruit sugar. Fruit sugar you would think would be very health, but no!! Apples and pears at the top of the list. Look it up. And make sure to cut all fructose. honey, etc. from your diet. There is a lot of information and you need to look everything up to help to stay healthy. This is serious, so don't sell yourself short.